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Anybody Out There A Morbidly Obese Celiac?

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Posted 03 July 2009 - 01:02 AM

Hey I am a newly diagnosed Celiac and I am also morbidly obese. My doctor practically laughed in my face when I asked to be tested and the only reason I got tested was because my extremely skinny mother was diagnosed and her doctor said all family members should be tested. So there I was getting laughed at. Funny thing of course... I ended up having it. I thought that people with celiac disease usually were malnourished. Am I way off base? Anyway I weight a LOT and I am wondering if there are more out there like me.

I am a 23 year old female. I am not a heavy eater but have been huge since I was maybe 8 or 9 years old. I have also been diagnosed with PCOS, Sleep apnea, Chronic Migraines, Depression and anxiety, Graves disease, high blood pressure... Lots of things. I have a hard time losing weight on any diet even when working out. I train a lot with my dad and he ran an ironman last year...here i sit extremely big losing maybe 3-4 lbs when working out. I don't get it and frankly my doctors have been dumbfounded. I have yet to become completely gluten free because I make a lot of beginner mistakes. If there is anyone out there in the same boat or even on the same ocean, has the gluten-free diet helped you lose weight at all? Or at least helped you be able to lose weight.

Thanks for any input
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Posted 03 July 2009 - 02:53 AM

Oh, ((((hugs)))) girl! I'm not only in the same ocean.... I'm swimming right there beside you! 37 years old with PCOS, diabetes, sleep apnea, depression, etc. I'm 5' tall and am morbidly obese. :( I didn't figure out I was celiac until after my endo told me to go gluten free when she found out my 9yo son was celiac. I kind of blew her off since I certainly didn't fit the "typical" celiac description and I didn't have the classic symptoms when I would eat anything with gluten in it.

I've tried all kinds of diets, have done Weight Watchers so many times I lost count, South Beach, Slim-fast, etc and could never lose more than a couple of pounds. UNTIL... about a month ago I went totally gluten free. I'm now down at least 15 lbs!!!! Yes, I have slipped and eaten gluten - not only did I end up with the nasty tummy effects but I would gain 3 lbs overnight! :unsure: It seems that the longer I'm gluten free, the more sensitive I am to when I do have it.

You will feel *so* much better once you finally get the gluten out of your system. Yes, it's hard, but so worth it! I've had to remember that whenever we eat gluten, we are damaging our bodies, whether or not we feel sick.

I'm willing to do this with you. Feel free to send me a message either through the board or e-mail me (my e-mail should be available on my profile page).

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Posted 03 July 2009 - 09:39 AM

I am obese too. I have been overweight since I was in Jr high. Sadly, I havn't lost any weight since going gluten-free. But everyones body is different. You may be lucky and lose weight, but you may not.
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Mom of 4 beautiful girls (the 2 youngest are only 10 months apart!)
Diagnosed with Celiac disease on November 8, 2006; gluten-free as of 12-1-06.

DD#2 13 years old; diagnosed on November 28, 2006. gluten-free as of 12-7-06.
DD#3 9 years old; diagnosed through blood work in October 2006. Gluten-free as of mid-November and doing GREAT!!
DD#4 8 years old; had a scope done on 6-22-07 (at 14 months old) and the dr saw stomach ulcers, but all test results were negative. GI dr told us to put her on the gluten free diet anyway. She is gluten free as of 6-22-07.



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Posted 03 July 2009 - 11:38 AM

I am obese too. I have been overweight since I was in Jr high. Sadly, I havn't lost any weight since going gluten-free. But everyones body is different. You may be lucky and lose weight, but you may not.

Ptkds's story is my experience in a nutshell. But I'm on prednisone for autoimmune hepatitis right now....I'm hoping that when I'm off it I will start to lose.

It's possible that I will have to cut out other foods too....I know that some on this board have had to eliminate most or even all grains and dairy in order to lose weight and feel better.

Good luck!
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Multiple autoimmune diseases, including celiac, Hashimoto's, psoriasis, autoimmune hepatitis, RA, SLE. Also have fibromyalgia.

Tested Fall 2008: bloodwork, biopsy negative; HLA DQ8. Doctor believes results negative due to prednisone and Imuran taken for autoimmune hepatitis.

Dx with celiac disease because of dietary response, genetics, and family history of celiac disease.

Dx with Lyme Disease Jan 2010; Lyme likely triggered some of the AI diseases.

Gluten free since 25 Nov 2008



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Posted 03 July 2009 - 01:34 PM

I can't say I'm obese, but one of the effects of undiagnosed celiac disease in me was gaining weight - to my 105lb I added about 25lb fat while losing muscle and not able to reverse this process, which was very unusual. Now after less then 6 months on gluten-free diet I'm still overweight but it gets better as my body recovers and fights off other health problems triggered by celiac disease.

To quote the statistics, about 20% diagnosed celiacs (European and North American) are obese or overweight. My guess is the percentage is even higher among undiagnosed celiacs since, despite the evidence, most doctors still laugh at the idea of obese celiac.
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Posted 03 July 2009 - 05:11 PM

Sometimes, when you go on a gluten free diet, and you still do not lose, it may mean you have another intolerance. If you are eating a lot of processed gluten free foods, they are much heavier than regular old wheat flour products. Try eating natural foods, nothing processed, stay away from high fructose corn syrup, and sugars.

When I was my sickest, I was my heaviest. For some of us, malnourishment adds pounds. Our bodies go into starvation mode, and takes what it can to build up our fat stores. It's not true that most celiac's are thin, some are, some aren't. One of my sons is very heavy, and his doctors haven't checked him for celiac, "You don't look celiac!" There is no "celiac" look.

I have many intolerance's, and have a constant battle with weight. I have been working very hard at losing weight, and at this time, have lost about 35#. I exercise for about 30 mins every morning, and take a walk in the evenings as often as I can. I do not eat any processed foods, except for my peanut butter, which is Skippy Natural, only 3 ingredients. I have recently had to go lactose free, so I have given up cheese. I also was recently informed that many of the gluten free products still contain sometimes 20ppm of gluten, some 10ppm...though some of us cannot tolerate that amount...I stay away from all grains now.

One day, you will figure this all out. Good luck.
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Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!



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Posted 05 July 2009 - 09:53 AM

First off, your doctor was a jerk for laughing at you. I am not the super sensitive type, but nonetheless, that was uncalled for. I know most people with celiac have diarrhea, I had extreme constipation. Also, you have graves, typically people lose weight AND/or have diarrhea mixed with bouts of constipation. Typically, that is, but we are people, not merely symptoms. I was hyper before turned hypo and I never lost a pound, but had every other symptom.How are you being treated for PCOS/Graves?? I am not overweight, but I was always very bloated and retained a lot of fluid before going gluten free. Also, I have many hormonal issues, that is another story. You could possibly have other food intolerances, making it difficult to lose weight. Many people with PCOS do quite well on low-carb diets, you may want to look into it.
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Posted 06 July 2009 - 04:32 AM

I was very overweight, a little less so these days. I was diagnosed in December of 08 and began eating EVERYTHING that said gluten free. And no I didn't lose weight and even gained some from all the crazy food I ate while remaining gluten free. In February I started cutting out processed foods, basically no flour or sugar, that worked. I'm losing weight and I can eat dairy for the first time in years. I thought I couldn't have Celiac because I was fat but thank goodness I had a great doctor who just kept investigating why I had constant diarrhea for 30 years. I feel better now than I have in many years. Good luck with your journey, it is so worth it.
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Diagnosed Dec. 2008

Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010
Large B cell lymphoma 2011



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Posted 06 July 2009 - 09:31 AM

The skinny celiac is more and more a thing of the past. Doctors get their knowledge from school they attended 20-30 years ago and don't seem to get updated. You're not an anomaly!
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Posted 07 July 2009 - 11:09 PM

I think the most recent statistics are that 40% (including me) were overweight at the time of diagnosis. I am (too) close to being obese...scary. I think my body still thinks it's starving. My nutritionist told me at diagnosis that my body thought it was starving so it held on to every last calorie and it lowered my metabolism so I wouldn't burn more calories. I had low vitamin D levels and osteopenia. The conventional wisdom is that skinny women get osteopenia because they don't eat enough to get the right nutrients. I carry around a lot of extra weight and still didn't get the nutrients.

I think that I will have to eliminate all sugar, flours and go on a paleo-type diet to lose weight... just can't seem to do it though.

Hang in there ts1986!

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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States



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Posted 08 July 2009 - 05:45 AM

It's always been obvious to me that the women who are morbidly obese and have very thin hair and open sores are malnourished. I'm just a Mom, a dr should know better than to assume that a overweight person can not be malnourished.

According to my WII I'm overweight. I lose weight quickly when I go low carb (under 10 carbs a day) but it's incredibly hard to sustain. So I tell myself I'll have more time for that when schools out for the summer, then when the kids go back to school I'll have more time. It's bull, I just don't enjoy cooking! My latest deal with myself is .....July 16th I'll go low carb until my WII smiles.

I don't have to weight in to play golf! :D
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Dx Celiacs March '09



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Posted 10 July 2009 - 03:48 AM

I was very obese before going gluten free. I lost some because my digestion was so bad I could hardly eat anything, but although I hoped that dropping the gluten was the key to weight loss, it didn't happen.

The thing is, I was told years ago that I should eat low-carb, and whilst I did, I would lose weight and feel great, but as others have said, it was hard to keep up and inevitably the weight would pile back on as the carb intake increased.

I eventually developed IBS then Diabetes about 12 years ago. I was plagued with Candida infestations.

Since my digestive collapse and the realisation I was gluten intolerant I have done a lot of research. Recently I think I have picked up the missing link - for me, but I feel that it may well be true for a lot of people.

Carbs drive blood sugar. As a diabetic that is an issue for me, but you don't have to have Diabetes to be affected by blood sugar issues. Blood sugar drives insulin. If the blood sugar is constantly raised due to carb intake then the pancreas has to keep pumping out insulin.

Insulin is the fat laying hormone. If farmers want to fatten animals, they don't feed them fat or protein, they feed them grain - carbohydrate. Fat does not make you fat. Carbohydrates are turned into fat in the body - insulin sees to that. So every time you eat more carbohydrate than your body needs, it gets turned into fat. If you eat fat with carbohydrates the body will use the fat as fuel and store the carbs.

On lower carbs I still could not lose weight very easily, but 10 days ago I really reigned in my carb intake and gradually upped my fat intake and now the weight is dropping off. 7lbs in 10 days.

Not only that, but the higher fat is dealing with the 'fungus factory'. That was better on the low-carb diet, but it has really improved over the past 10 days. And if the external signs are improving then I can only have faith that the internal ones are too.

I am no longer craving chocolate - I now think that what I was actually craving was not the chocolate itself but the fat in it. I no longer need to snack all evening, and I actually eat less overall. It really looks as if my body is now getting what it needs. We are only driven to eat when our body needs nutrition. If it doesn't get it from the right food, then we are compelled to overeat.

I make sure that my diet is very good and nutritious - wholesome natural foods, fruit, veg, meat, fish, nuts and yogurt, and that the fats are good ones - some animal fats (they do not raise cholesterol!), butter, coconut oil, ghee, olive oil, and I also take cod liver oil and flaxseed oil supplements for their vitamin D and A, trace elements, minerals and essential fatty acids. I avoid trans-fats and hydrogenated and most vegetable oils, especially for cooking (ever tried to scrape the cemented oil off a fryer? Yuk. Just imagine what that is doing to your cells!).

More and more health professionals are coming round to realise all this, but quite how long it would take to become mainstream is anybody's guess.

I have effectively turned the food pyramid upside down. I now eat low-carb, medium protein and higher fat with plenty of veggies and some fruit. You don't have to go like Atkins and stuff yourself with protein either as that will push up the blood sugar albeit more slowly.

If you look at indigenous lean, healthy cultures, they all eat a goodly supply of fats and not too much in the way of carbs, and certainly nothing processed or refined or sugar-laden. Some healthy cultures like the Inuit eat virtually no carbs at all, which knocks those who state categorically that we need carbs, right out of the water.

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Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........



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Posted 10 July 2009 - 11:35 AM

I gained weight before being diagnosed, alot of it! I tried and tried to lose these past few months and didn't budge. Since going off gluten June 2 I've lost 18 pounds...this past week I'm off dairy, soy, and just recently realised that cottonseed oil might be making me bloat again, so thats out too. I record my food intake on sparkpeople (well this week I haven't recorded due to sickness, but if you go to my sparkpage you can see past food journals) The things that help me are to eat a decent breakfast, try to keep small meals throughout the day with a early supper around 3-4... and then light foods the rest of the day. Apples and peaches are great for me when I don't know what to eat. Also sleep is paramount to losing weight, so make sure you aren't skimping on sleep. I drink lots of water too.

Sparkpeople is phenominal, they have a great Celiac sparkteam too. so good I can't believe its still free. www.sparkpeople.com

http://www.sparkpeop...asp?id=NAHUM1_7 - my page

Keeping you in my prayers, don't give up...even just losing 5 pounds made a little difference to me. I keep track of it 10 pounds at a time by moving little numbers across my fridge. It makes it much less overwhelming than looking at needing to lose a huge amount of weight. Those 10 pounds brackets will add up over time, the most important thing is that I get healthier.

more (((((hugs)))))) my docs ignored me for a long time until I switched to a different one. I was deficient and so sick, each day I'm so thankful that I'm one more day closer to healing.
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Posted 14 July 2009 - 11:20 AM

Congratulations AliB! We, my family and I, recently went low(er) carb also and my husband lost 15 pounds in about 6 weeks. None of us are overweight, we mainly did it for health reasons. My husband had his cholesterol checked and the doctor told him to cut out sugar and carbs to bring down his triglycerides and boost his HDL. It really worked! and the weight loss was a bonus. With heart disease and diabetes in our genes I figured sugar wasn't good for any of the rest of us either so we're all doing his diet. His triglycerides were cut in half, his LDL also went down and his HDL went up with the inclusion of more and better fats (see AliB's post for a list) in our diet. I'm just finishing the book "Good Calories, Bad Calories" by Gary Taubes. It is SO fascinating !! He discusses how carbohydrates contribute to a host of health problems (obesity, heart disease, diabetes, high blood pressure, etc...) and how the research has shown this but they continue to push the idea (without any real proof) that fat is bad for you, makes you fat, clogs your arteries - NOT TRUE. I recommend the book to anyone who has an interest in their health. Just know that low carb is a lifestyle change if you really want to have benefits from it, not a temporary fix. And you have to do as AliB says, and turn the old pyramid and "conventional wisdom" upside down. Anyway, when we went gluten-free we just replaced all the other wheat stuff (crackers, breads, cereals) with equally bad or worse substitutes that had so much corn, white rice, potato/tapioca/corn starch, sugar etc... Not even thinking about how bad and nutritionally devoid it all is. Yes it's gluten-free, but that doesn't mean it's good for us. Now we eat pretty much the same way AliB described her diet: a lot of veggies, meats, good fats, nuts, cheese, yogurt (homemade without sugar), and a fair amount of fruit (though always with the meal that contains fat and protein to help regulate the blood sugar). We have brown rice or potatoes VERY rarely and in small amounts, but for the most part we don't eat any grains, starches or sugar. I use almond flour and flax meal exclusively now for baking (no more rice flour, starches and xanthan to mess with) and it is SO much better! I would say it was about as hard to go low carb as it was to go gluten-free, but boy is it worth it and actually easier/healthier. And if you go low carb while going gluten-free, it's only one transition instead of the two transitions that we did.
I wish you all the best in your quest for good health.
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Posted 25 July 2009 - 09:31 PM

I was morbidly obese for many years.

As a child, I remember thinking, "Why can other kids eat a sandwiche, chips, milk for lunch . . . maybe even a Twinkie . . . and not gain weight?" It never made sense to me.

AND, I was as active as them, but I was always the nerd-fat-little-girl, even though I ran and played with the best of 'em. The only time anyone wanted me on their team was when we were playing red-rover, because I was always the chubby one who could break through the line.

Then, as an adult, I gave up and ate too much. I figured, what the heck . . . if nothing I do makes any difference, I might as well gorge and enjoy it. Sad, but true.

Later, I lost over 100 pounds and managed to get back to the top end of my BMI, but it was hard to do it sometimes. Looking back, I think gluten made it difficult. I struggled horribly when I would eat any refined foods. Once I went whole-foods only, I did okay. Pasta was a no-no, even if whole wheat. I did eat whole grain bread, but I did better on the weeks when I didn't have it.

Other whole grains were fine, however. Those that did not contain gluten. I didn't know it at the time, though, and just kind of hunt-and-pecked my way through things.

I am currently having to eat gluten every day for many weeks so I can be tested for Celiac. All I can say is that when I am gluten-free or near gluten-free, I can lose weight. When I eat gluten, I struggle so much it brings me to tears.

Case in point: I have gained 15 POUNDS in the last few weeks since having to eat gluten every day, and it is REALLY, REALLY HARD to keep going . . . but I know I must. I can get through this. Yes I can.

I have read that some people hold on to calories in an effort to survive. That is, your body and brain understand that your upper intestine isn't absorbing nutrients . . . so when the food reaches the lower intestine, it does everything it can to hold on to every gram of fat, every calorie, in an effort to keep you as healthy as possible.

I don't know if that is true, but it sure feels as though it may be true for me. Time will tell as I get my test results. In the meantime, please know that you have a friend here who cares most deeply and understands.

I am sending you hugs and best wishes!

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Gluten Intolerant with double HLA-DQ6. Pre-diagnosis: Weight gain, swelling, diarrhea, mouth sores, back pain, body aches, fatigue, muscle weakness, BRAIN FOG, runny nose, recurrent sinus infections, bruising, low white cell count (whole life), and more. My feet were so bad, I could hardly walk. Toward the end: Chronic Vit. D deficiency (almost no D in my body despite a quality multi-vit. each day).

There is hope! Gluten-free since Sept. '09, and I have my life back - I feel better than in many, many years!

Favorite quotation: "You must do the thing you think you cannot do." - Eleanor Roosevelt

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